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Patient Advocate ･ Public Speaker ･ Strategic Communications Professional + Social Strategist ･ Host of Achondroplasia Research Conference

Recent Posts

11 years later, I remember it all too well Aug 5, 2021
2021 Achondroplasia Research Conference Jul 12, 2021
Born Small Apr 24, 2021
Never Change, but Never Stay the Same Apr 8, 2021
Rare Disease Day 2021 Feb 28, 2021
What Matters to Me Feb 21, 2021

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what’s on my mind

@chancrews

･ autumn leaves falling down like pieces into pl

･ autumn leaves falling down like pieces into place…it’s finally fall, y’all 🍂 and, it’s October which means it’s #DwarfismAwarenessMonth. 💚

This year, pieces are finally falling into place. This is the last #DwarfismAwareness Month without a pharmaceutical treatment option on the market for those with #achondroplasia. 50 days from now, if pieces continue to fall into place, @biomarinofficial’s VOXZOGO will be FDA approved and available in the United States – more than a decade since they first announced their program for the treatment of achondroplasia.

When the #FGFR3 gene was discovered almost 3 decades ago, many in the dwarfism community were terrified that achondroplasia would soon go away...here we are 27 years later and it’s still here. I guarantee it’ll be here for another 27 years as well.

It keeps getting misconstrued that #VOXZOGO and the therapies coming up behind it will soon eradicate the condition. To my knowledge, they won’t. Those who are treated by these therapies will still have achondroplasia. Only, they’ll be able to live with the condition more fearlessly.

Fearless of #SIDS.
Fearless of foramen magnum compression.
Fearless of ear infections.
Fearless of trouble breathing.
Fearless of #spinalstenosis.
Fearless of legs that can only get them so far before giving out.

They will still have #dwarfism. That needs to be acknowledged and understood rather than trying to exile those individuals from the “supportive” community. We share a condition, not a lifestyle.

For the young girl in the photo, she knew what her options were. There were only two. Limb lengthening or nothing at all. Nothing at all could’ve been okay, but #limblengthening gave her everything she ever dreamt of & more. However, had there been another option(s), she may have been able to achieve her goals plus more by the time she was 16, giving her the chance to enter adulthood without the worry of future stenosis & other life-threatening complications.

I’m excited to see what new opportunities and hope this next year brings for this community — here’s to a stronger and supportive community. Happy Friday & October, friends. ✨

#DAM2021

･ happy #nationaldogday to my BEAUtiful boy…my

･ happy #nationaldogday to my BEAUtiful boy…my fluffy potato…my messy roommate 🐶 these past 9 months with you have been the smiliest, snuggliest, and sassiest — you’re the best money ever spent in the @mccainmall parking lot 😘 love you to the moon & to saturn, sweet boy 🪐

･･･
#beaualexander #beaugust #baltimoredogs #chihuahua #chihuahuasofinstagram #puppiesofinstagram #ndd #dogday #dogsofinstagram #dogsofbravo

･ 500 tucks given ‼️ also, emphasis on the w

･ 500 tucks given ‼️ also, emphasis on the word ‘platform’ 😅 (see previous post)

･･･
#purebarre #lifttoneburn #wellnessmonth #mindandbody #powerofshe #spanxstyle #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #itsathing #standardized #iSTANDcorrected #patientadvocate

･ @rarelikeher said it best 💗 today is #Natio

･ @rarelikeher said it best 💗 today is #NationalPatientAdvocacyDay. I’m going to try to say this in my own words as much as I can without taking from her, but Taylor truly said it all.

I also had never heard the term “patient advocacy” until about 3 years ago. It was around the time when I first went to the @fda to speak in favor of furthering research for the treatment of #achondroplasia. Now, we are just about 3 months away from the first #pharmaceutical option for achondroplasia being on the market in the U.S. 🤞🏻

Is achondroplasia a #raredisease? Yes, I consider it to be as it’s caused by a #geneticmutation and has many life-threatening complications associated with it. 💔

11 years ago when I decided to start my Facebook page, I never would’ve expected to have this platform which I now know is called patient advocacy. 👩🏼‍💻

Those of us who are patient advocates, came into this network by a series of unfortunate events. We were impacted by something we never wished for nor did our parents ever hope for us to have. But we decided to take a stand and use our voices. We’re more than just advocating – we’re lobbying to members of congress to support motions that can advance new research & developments for treatment options and to have easy access when treatments are approved. We’re working closely with pharma co.’s to express what it is we suffer from with our respective rare diseases. We’re constantly in communication with parents & caregivers of loved ones who share our diagnosis who are always asking us, “What can we do? Every day that there’s not an option out there for my child, is another day too late. We want…no, need…these treatments. Help us, please. We will change states or move across the country if that’s what it takes.” We get these messages because there are very few advocates out there who when told to “suck it up and accept your diagnosis – you should feel pride,” we decided that we weren’t going to suffer or let others suffer either – should they choose not too. 🙏🏻

It’s a full - and mostly unpaid - time job. But it’s a commitment & fulfilling experience and if we weren’t passionate about it, we wouldn’t be doing it. 😘

COPYRIGHT © 2021 · CHANDLER CREWS · HEARTEN MADE

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